The day my life changed foreverBy Jillian Kingsford Smith | May 30, 12 11:29 AM
Today is World MS Awareness Day. Here's one woman's story of the day her life changed forever.
I bet that every single one of you reading this has, at some point, uttered the words “life is just too busy at the moment.”
Mine was certainly like that. I own a digital marketing agency, which keeps me fully occupied, but on top of that, I was dealing with a fairly messy separation from my husband, who'd left his and my personal life in a mess. I was selling my house, trying to pack, get refinanced to buy a new house, trying to keep the business development funnel full, sitting on the board of a local festival and several charities and then on top of that, dealing with my dog's phantom pregnancy (don’t ask...).
Yes, life was quite full and chaotic and never shy of drama. But isn't every woman's life like that?
Which is why, when I finally presented to hospital, I found the look of disbelief on the doctor’s faces hard to understand when they would ask me "why didn't you come in earlier?"
"Because I've been a bit busy and thought it would all just go away."
Their look told me I was absolutely crazy and I'm sure at that point they were making arrangements to transfer me to the psych ward, not neurology. What was about to happen over the next 30 days was nothing short of surreal for me and was the start of my 'busy life' being a very different one.
Originally I just thought I had the flu or a cold. When I started losing all feeling in the left side of my body, I suspected it might have been a pinched nerve.
When I fell flat on my face walking out of a potential client’s boardroom because my left leg wouldn’t move and I had no balance, I progressed it to a middle ear infection.
After five days of worsening symptoms, my horrified doctor put me straight into an ambulance to Royal Brisbane Hospital. The next 48 hours were filled with grave-looking doctors talking about anything from stroke to TIA (a mini-stroke) to a neck injury. Only once did someone fleetingly mention MS (multiple sclerosis). I immediately thought ‘not me. I’d rather be having a stroke.’
I had multiple ultrasound scans, MRIs and another couple of tests with machines that go beep.
Finally on April Fool’s day, a young resident doctor strode into my ward, announced I had MS and then directed an orderly to take me off to another test.
I couldn’t believe it. What did he just say? And had he skipped the bedside manner module at university? At that moment my Dad walked in after a six hour drive from regional NSW. I absolutely lost it and told him to call the doctor and get him back up to explain what was going on. I could barely speak through the tears.
The next few days were filled with shell shock, even more tests to assess the progression and too much time feeling scared silly. Outwardly I was trying to keep as brave a face as possible for my family, but at night I howled into my pillow. It would be many weeks before the disbelief shifted and I’m not even sure it has to this day.
A diagnosis of chronic disease changes you. Overnight, everything changes. I’m still trying to be the same happy, optimistic, goal-oriented, full-of-life person. But I’m tired and scared. It’s early days so I know I will find an inner peace with everything, but the ‘A-type’ personality in me wants answers NOW!
Since that horribly blurted out diagnosis, I have googled ‘MS’ and really found very little useful information on how to live with MS. I found some scientific stuff, some scary accounts of medication and treatments and a very ‘cute’ ebook that had been written about 20 years ago... certainly nothing I could relate to.
All the blogs and books tell you to guard your energy, change your schedule so you can have a sleep during the day and not be worried about rampant emotions. Well that’s not good enough for me.
I didn’t necessarily want to jump up and run to a support group, but I would have loved to have read some ‘real life’ stories that I could relate to about how people got on with their life. I wanted to be pointed in the right direction so I could work out a plan of action for myself.
I spent a month in hospital initially. The only thing that kept me sane was Facebook. I didn’t necessarily want to tell people about my diagnosis at that point – and certainly not on a social networking platform - but I found that recounting the weird and wonderful things that went on in hospital in a humorous way were my salve.
When I told a few trusted friends what had been going on, every single one of them urged me to write a book about the experience. But more importantly, I wanted to write a book that might take some of the fear or worry or anxiety out of those first few weeks and months for others. If I could write a book that gave each person just one bit of information that helped ease the fear, or one tip that would help them plan their day better or a website that would offer some advice, I figured that would be a great way to help others. I don’t have all the answers myself! It’s still early days for me. But I have the power to harness other great women (and I’m sure a few men!) to share their stories and advice.
So I’ve decided to do it. My book will be a compilation of those stories. I’m a journalist by trade and I love hearing the story about other peoples’ journeys. If you’d like to share your own journey, and by doing so, share your ways of coping with MS, I think we could create a great book that captures some incredible thoughts, some inspiring stories and a whole lot of ideas on coping and living with MS.
Tomorrow (ironically, the day after World MS Awareness Day) I move back to Brisbane after two months of resting at my parent’s farm. I bought a new apartment while I was in hospital and I’m looking forward to getting back into life and work and being with my friends. I’m also scared about coping by myself. This from the girl who has travelled the world by herself since she was 18 and is fiercely independent. I still have some mobility issues and can’t feel my left leg. I wake up with headaches every day and my memory can be sketchy when I’m tired. But I’m ready to start living life to the fullest again; setting some new healthy habits and goals, building myself up physically and mentally and sinking my teeth into this book project, which I really hope will alleviate some of the fear from the 1000 people who are diagnosed in Australia every year with MS.
If you are living with MS, or know someone with MS, Jillian would love to hear from you. You can connect with her here or email her at email@example.com